In the Caribbean as in many other areas costly biomedical resources and personnel are limited, and more and more people are turning to alternative medicine and folk practitioners for health care. To meet the goal of providing health care for all, research on nonbiomedical therapies is needed, along with legal recognition of folk practitioners to establish standards of practice.

This grounded study investigated the negotiation of authorship by faculty members, graduate student mentors, and their undergraduate protégés in undergraduate research experiences at a private research university in the northeastern United States. Semi-structured interviews using complementary scripts were conducted separately with 42 participants over a 3 year period to probe their knowledge and understanding of responsible authorship and publication practices and learn how faculty and students entered into authorship decision-making intended to lead to the publication of peer-reviewed technical papers. Herein (...) the theoretical model for the negotiation of authorship developed through the analysis of these interviews is reported. The model identifies critical causal and intervening conditions responsible for the coping strategies faculty and students employ, which, in our study, appear to often produce unfortunate consequences for all involved. The undergraduate student researchers and their graduate student mentors interviewed in this study exhibited a limited understanding of authorship and the requirements for authorship in their research groups. The power differential between faculty and students, the students’ limited epistemic development, the busy-ness of the faculty, and the faculty’s failure to prioritize authorship have been identified as key factors inhibiting both undergraduate and graduate students from developing a deeper understanding of responsible authorship and publication practices. Implications for graduate education and undergraduate research are discussed, and strategies for helping all students to develop a deeper understanding of authorship are identified. (shrink)

The right not to know is underappreciated in policy-making. Despite its articulation in medical law and ethics, policy-makers too easily let other concerns override the right not to know. This observation is triggered by a recent decision of the Dutch government on embryo selection for Huntington’s disease. This is a monogenetic debilitating disease without cure, leading to death in early middle age, and thus is a likely candidate for preimplantation genetic diagnosis. People possibly affected with the Huntington gene do not (...) always want to know their genetic status themselves, which is very burdensome knowledge. For prospective parents, this creates a difficulty in having unaffected children through embryo selection without knowing their own genetic status. A solution is provided by the exclusion test: it allows embryo selection while honouring the parents’ right not to know. The Dutch government however disallowed the exclusion test and chose to allow PGD on Huntington only for parents who test themselves first. To avoid “unnecessary” in-vitro fertilisation procedures for unaffected parents, prospective parents are “forced to know” before they can conceive through embryo selection. This article analyses the scope of the right not to know in the context of embryo selection against Huntington’s disease. It concludes that the right not to know implies that PGD against Huntington should be allowed by means of the exclusion test. (shrink)

The December 2008 White Paper (WP) on “Brain Death” published by the President’s Council on Bioethics (PCBE) reaffirmed its support for the traditional neurological criteria for human death. It spends considerable time explaining and critiquing what it takes to be the most challenging recent argument opposing the neurological criteria formulated by D. Alan Shewmon, a leading critic of the “whole brain death” standard. The purpose of this essay is to evaluate and critique the PCBE’s argument. The essay begins with a (...) brief background on the history of the neurological criteria in the United States and on the preparation of the 2008 WP. After introducing the WP’s contents, the essay sets forth Shewmon’s challenge to the traditional neurological criteria and the PCBE’s reply to Shewmon. The essay concludes by critiquing the WP’s novel justification for reaffirming the traditional conclusion, a justification the essay finds wanting. (shrink)

Recombinant DNA technology will soon allow physicians an opportunity to carry out both somatic cell- and Germ-Line gene therapy. While somatic cell gene therapy raises no new ethical problems, gene therapy of gametes, fertilized eggs or early embryos does raise several novel concerns. The first issue discussed here relates to making a distinction between negative and positive eugenics; the second issue deals with the evolutionary consequences of lost genetic diversity. In distinguishing between positive and negative eugenics, the concept of malady (...) is applied as a definitional criterion for identifying genetic disorders that could qualify for Germ-Line therapy. Because gene replacement techniques are currently unavailable for humans, and because even if they were possible the number of people involved would be quite small, the loss of diversity concern seems moot. Finally, we dissuss the issue of iatrogenic disorders associated with gene therapy and discuss several ‘real world considerations.’. (shrink)

According to the biological definition of death, a human body that has not lost the capacity to holistically organize itself is the body of a living human individual. Reasonable doubt against the conclusion that it has lost the capacity exists when the body appears to express it and no evidence to the contrary is sufficient to rule out reasonable doubt against the conclusion that the apparent expression is a true expression. This essay argues that the evidence and arguments against the (...) conclusion that the signs of complex bodily integration exhibited in ventilated brain dead bodies are true expressions of somatic integration are unpersuasive; that is, they are not adequate to exclude reasonable doubt against the conclusion that BD bodies are dead. Since we should not treat as corpses what for all we know might be living human beings, it follows that we have an obligation to treat BD individuals as if they were living human beings. (shrink)

Theorists at the interface of medicine and the humanities have recently suggested that interpretation as a literary activity can be applied to the practice of clinical medicine. This article reviews such theories and their literary metaphors and methods. In pushing these ideas further, it is proposed that a number of guidelines can be applied to interpretation as a practical activity for clinical medicine.

The Congregation for the Doctrine of the Faith, under the prefecture of Joseph Ratzinger, published its instruction Donum vitae in 1987 to provide moral guidance on bioethical issues. Since 1987, many new ethical issues have arisen, especially in the areas of regenerative medicine (which includes stem cellresearch) and assisted reproduction. To address these the CDF, under the prefecture of William Levada, published the bioethical instruction Dignitas personae inDecember 2008. The present symposium includes reflections on the strengths and weaknesses of (...) the new document by six moral theologians noted for theirwork in bioethics: Christian Brugger, John Finnis, Luke Gormally, Christopher Kaczor, William E. May, and Peter F. Ryan, S.J. National Catholic Bioethics Quarterly 9.3 (Autumn 2009): 461–483. (shrink)

Scientific research and ethics -- Ethical theory and decision making -- Data acquisition and management -- Mentoring and professional relationship -- Collaboration in research -- Authorship -- Publication and peer review -- Misconduct in research -- Intellectual property -- Conflicts of interest and scientific objectivity -- The use of animals in research -- The use of human subjects in research -- The use of vulnerable subjects in research -- Genetics, cloning, and stem cell research -- International research.

The discussion about complementary and alternative medicine is sometimes rather heated. “Quackery!” the cry goes. A large proportion “of unconventional practices entail theories that are patently unscientific.” “It is time for the scientific community to stop giving alternative medicine a free ride. There cannot be two kinds of medicine — conventional and alternative. There is only medicine that has been adequately tested and medicine that has not, medicine that works and medicine that may (...) or may not work.” “I submit that if these treatments cannot withstand the test of empirical research, … then we have wasted a lot of time and effort. The time has been wasted on all the people who have spent years learning falsehoods about acupuncture points and the principles of homeopathy. And the patients have wasted their time, money, and efforts receiving treatments that were not what they were represented to be or were harmful.”. (shrink)

That moral principles underlie and constrain the activity of members of professions such as medicine and law is generally acknowledged. Whether the same can be said of the military profession is a question likely to generate considerable uncertainty. In this paper I shall show that, like other professions, the military profession is informed by a moral teleology. The source of this teleology, for the profession of arms, is manifested in the laws of war. The laws of war, in turn, (...) reflect two humanitarian principles. (shrink)

The discussion about complementary and alternative medicine is sometimes rather heated. “Quackery!” the cry goes. A large proportion “of unconventional practices entail theories that are patently unscientific.” “It is time for the scientific community to stop giving alternative medicine a free ride. There cannot be two kinds of medicine — conventional and alternative. There is only medicine that has been adequately tested and medicine that has not, medicine that works and medicine that may (...) or may not work.” “I submit that if these treatments cannot withstand the test of empirical research, … then we have wasted a lot of time and effort. The time has been wasted on all the people who have spent years learning falsehoods about acupuncture points and the principles of homeopathy. And the patients have wasted their time, money, and efforts receiving treatments that were not what they were represented to be or were harmful.”. (shrink)

This essay has two purposes. The first is to argue that our moral duties towards human embryos should be assessed in light of the Golden Rule by asking the normative question, “how would I want to be treated if I were an embryo?” Some reject the proposition “I was an embryo” on the basis that embryos should not be recognized as persons. This essay replies to five common arguments denying the personhood of human embryos: (1) that early human embryos lack (...) ontological individuation; (2) that they are members of the species Homo sapiens but not yet human persons; (3) that the argument for personhood commits the “heap argument” fallacy; (4) that since human procreation in nature is inefficient, human embryos cannot be persons; and (5) the “burning building” scenario proves that all arguments for personhood are irrational or inconsistent. The second purpose is to set forth and criticize in light of the normative judgement defended in part one the present legal situation of cryo-preserved embryos in the U.S. The essay ends by proposing legislative reforms to protect ex utero human embryos. (shrink)

Although modern technical and scientific developments in medicine are followed closely in Turkey, it cannot be claimed that the same is true in the field of bioethics. Yet, more and more attention is now being paid to bioethics and ethics training in health sciences. In addition, there are also legal regulations in bioethics, some of which are not so new. The objective of these regulations is to provide technical and administrative control. Ethical concerns are rather few. What attracts our (...) attention most in these regulations is the presence of the idea of "consent". (shrink)

This article explores Galen's analysis of and response to the Rationalist and Empiricist medical sects. It argues that his interest in their debate concerning the epistemology of medicine and anatomy was key to his advancement of an experimental methodology.

The diagnosis of attention-deficit hyperactivity disorder is a subject of controversy, for a host of reasons. This paper seeks to explore the manner in which children's interests may be subsumed to those of parents, teachers, and society as a whole in the course of diagnosis, treatment, and labeling, utilizing a framework for children's citizenship proposed by Elizabeth Cohen. Additionally, the paper explores aspects of discipline associated with the diagnosis, as well as distributional pathologies resulting from the application of the diagnosis (...) in potentially biased ways. (shrink)

Standard models of adolescent risk taking posit that the cognitive abilities of adolescents and adults are equivalent, and that increases in risk taking that occur during adolescence are the result of socio emotional differences in impulsivity, sensation seeking, and lack of self-control. Fuzzy-trace theory incorporates these socio emotional differences. However, it predicts that there are also cognitive differences between adolescents and adults, specifically that there are developmental increases in gist-based intuition that reflects understanding. Gist understanding, as opposed to verbatim-based analysis, (...) generally has been hypothesized to have a protective effect on risk taking in adolescence. Gist understanding is also an essential element of informed consent regarding risks in medical decision- making. Evidence thus supports the argument that adolescents’ status as mature minors should be treated as an exception rather than a presumption, because accuracy in verbatim analysis is not mature gist understanding. Use of the exception should be accompanied by medical experts’ input on the bottom-line gist of risks involved in treatment. (shrink)

One of the most important questions in the ethics of human clinical research asks what obligations investigators owe the people who enroll in their studies. Research differs in many ways from standard care - the added uncertainties, for instance, and the nontherapeutic interventions such as diagnostic tests whose only purpose is to measure the effects of the research intervention. Hence arises the question whether a physician engaged in clinical research has the same obligations toward research subjects that he owes his (...) medical patients, or whether they differ in any fundamental way.Perhaps the most common answer is that the relationship is the same. Investigators, like physicians, are said to be fiduciaries of the volunteers who enroll in research trials. Each owes the best available medical care, which means that a physician can only justify enrolling his patient in research if the study meets the requirements of clinical equipoise, namely, that there is legitimate disagreement within the medical community as to whether the standard treatment or the investigational intervention is superior. (shrink)

One of the most important questions in the ethics of human clinical research asks what obligations investigators owe the people who enroll in their studies. Research differs in many ways from standard care - the added uncertainties, for instance, and the nontherapeutic interventions such as diagnostic tests whose only purpose is to measure the effects of the research intervention. Hence arises the question whether a physician engaged in clinical research has the same obligations toward research subjects that he owes his (...) medical patients, or whether they differ in any fundamental way.Perhaps the most common answer is that the relationship is the same. Investigators, like physicians, are said to be fiduciaries of the volunteers who enroll in research trials. Each owes the best available medical care, which means that a physician can only justify enrolling his patient in research if the study meets the requirements of clinical equipoise, namely, that there is legitimate disagreement within the medical community as to whether the standard treatment or the investigational intervention is superior. (shrink)

The ongoing economic overhaul of medicine creates two basic imperatives – boosting profits and containing costs – that pose special ethical and philosophical challenges for psychiatry. Because insurance coverage still favors inpatient care, pressures to raise renevues translate into a corresponding pressure on psychiatry as a whole to expand its diagnostic categories, and on individual psychiatrists to ascribe these diagnoses liberally and to hospitalize as many patients as possible. Reciprocally, cost containment requires all physicians to justify their care as (...) clearly as possible and to eliminate those interventions that are not of demonstrable value. Scientific outcome studies are markedly more difficult in psychiatry than elsewhere in medicine, particularly for psychotherapeutic as opposed to pharmacologic modes of care. An emphasis on biological over psychological conceptions of mental illness and treatment might result, not because it is more likely to be correct, but because it is easier to document in conventional ways and less expensive to deliver. An economicsdriven reorganization of psychiatry therefore poses serious philosophical challenges, not only for the profession and its future, but for the clinical care of patients. Keywords: cost containment, epistemology, ethics, economics, metaphysics, psychiatry CiteULike Connotea Del.icio.us What's this? (shrink)

This textbook introduces the reader to basic problems in the philosophy of science and ethics, mainly by means of examples from medicine. It is based on the conviction that philosophy, medical science, medical informatics, and medical ethics are overlapping disciplines. It claims that the philosophical lessons to learn from the twentieth century are not that nature is a 'social construction' and that 'anything goes' with respect to methodological and moral rules. Instead, it claims that there is scientific knowledge, but (...) that it is never completely secure; that there are norms, but that they are situation-bound; and that, therefore, it makes good sense to search for scientific truths and try to act in a morally decent way. Using philosophical catchwords, the authors advocate 'fallibilism' and 'particularism'; a combination that might be called 'pragmatic realism'. (shrink)

There is an international consensus that medical research involving humans should only be undertaken in accordance with ethical principles. Paradoxically though, there is no consensus over the kinds of activities that constitute research and should be subject to review. In the UK and elsewhere, research requiring review is distinguished from clinical audit. Unfortunately the two activities are not always easy to differentiate from one another. Moreover, as the volume of audit increases and becomes more formal in response to the demand (...) for evidence-based practice in medicine, the overlap between research and audit grows more acute. Arguably, similar ethical standards and systems for ensuring that those standards are met should be applied regardless of whether or not a project is classified as research or audit. At a time when the research ethics review system in the UK is undergoing significant reform it is important that the opportunity is not missed to address the longstanding research-audit problem. We discuss suggestions for further reform that addresses this issue. (shrink)

Evidence based medicine has been a topic of considerable controversy in medical and health care circles over its short lifetime, because of the claims made by its exponents about the criteria used to assess the evidence for or against the effectiveness of medical interventions. The central epistemological debates underpinning the debates about evidence based medicine are reviewed by this paper, and some areas are suggested where further work remains to be done. In particular, further work is needed on (...) the theory of evidence and inference; causation and correlation; clinical judgment and collective knowledge; the structure of medical theory; and the nature of clinical effectiveness. (shrink)

As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating (...) to the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. (shrink)

This article introduces cultural studies of medicine to medical humanities readers. Rather than offer extended definitions of cultural studies of medicine or provide a detailed history of the domain, I have organized this introduction around a close reading and review of three recently published texts in the field. These three texts, dealing respectively with cyborg technology, AIDS, and the medical management of sexual identity problems, represent excellent examples of the opportunities and possibilities of applying cultural studies approaches to (...) medical topics. After working through these texts (and the semiotic theories which animate them), I devote my conclusion to a broader consideration of the role of cultural studies of medicine for both medical practice and medical humanities scholarship. (shrink)

ABSTRACTMedicines that are vital for the saving and preserving of life in conditions of public health emergency or endemic serious disease are known as essential medicines. In many developing world settings such medicines may be unavailable, or unaffordably expensive for the majority of those in need of them. Furthermore, for many serious diseases these essential medicines are protected by patents that permit the patent‐holder to operate a monopoly on their manufacture and supply, and to price these medicines well above marginal (...) cost. Recent international legal doctrine has placed great stress on the need to globalise intellectual property rights protections, and on the rights of intellectual property rights holders to have their property rights enforced. Although international intellectual property rights law does permit compulsory licensing of protected inventions in the interests of public health, the use of this right by sovereign states has proved highly controversial. In this paper I give an argument in support of states’ sovereign right to expropriate private intellectual property in conditions of public health emergency. This argument turns on a social contract argument for the legitimacy of states. The argument shows, further, that under some circumstances states are not merely permitted compulsory to license inventions, but are actually obliged to do so, on pain of failure of their legitimacy as sovereign states. The argument draws freely on a loose interpretation of Thomas Hobbes's arguments in his Leviathan, and on an analogy between his state of War and the situation of public health disasters. (shrink)

In 2017, Italy passed a law that provides for a systematic discipline on informed consent, advance directives, and advance care planning. It ranges from decisions contextual to clinical necessity through the tool of consent/refusal to decisions anticipating future events through the tools of shared care planning and advance directives. Nothing is said in the law regarding the issue of physician assisted suicide. Following the DJ Fabo case, the Italian Constitutional Court declared the constitutional illegitimacy of article 580 of the criminal (...) code in the part in which it does not exclude the punishment of those who facilitate the suicide when the decision has been freely and autonomously made by a person kept alive by life-support treatments and suffering from an irreversible pathology, the source of physical or psychological suffering that he/she considers intolerable, but fully capable of making free and conscious decisions. Such conditions and methods of execution must be verified by a public structure of the national health service, after consulting the territorially competent ethics committee. This statement admits, within strict and regulated bounds, physician assisted suicide, so widening the range of end-of-life decisions for Italian patients. Future application and critical topics will be called into question by the Italian legislator. (shrink)

Biomedical research has brought to the fore the issue of which rights and duties we have to each other and society. Several scholars have advocated reframing the notion of participation, arguing that we have a moral duty to participate in research from which we all benefit. However, less attention has been paid to how we justify and defend the concept of self-determination and what the implications are in a biomedical setting. The author discusses the value and importance of self-determination on (...) the basis of the framework of the liberal-communitarian debate. Biobank research is used as an example of a project wherein, through our participation, we confirm our sense of belonging to society and acknowledge our mutual dependence on each other. We need a richer concept of self-determination that encompasses both liberal and communitarian insights in order to make sense of the value we attach to self-determination. (shrink)

Human clinical research trials, by which corporations, universities, and research scientists bring new drugs, devices, and procedures into the practice and marketplace of medicine, have become a huge business. The National Institutes of Health doubled its spending over the past five years, while in the private sector the top twenty pharmaceutical companies have more than doubled their investment in research and development over a roughly comparable period. To date, some twenty million Americans have participated in clinical research trials that (...) now are as common in the private practice setting as in academia.For many years human clinical trials received relatively little public attention. In the wake of several well-publicized research abuses, Congress created in 1974 the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research to formulate recommendations to protect human research subjects. The Commission’s 1979 Belmont Report helped to guide the Institutional Review Boards that review the ethics of federally funded research. (shrink)

Human clinical research trials, by which corporations, universities, and research scientists bring new drugs, devices, and procedures into the practice and marketplace of medicine, have become a huge business. The National Institutes of Health doubled its spending over the past five years, while in the private sector the top twenty pharmaceutical companies have more than doubled their investment in research and development over a roughly comparable period. To date, some twenty million Americans have participated in clinical research trials that (...) now are as common in the private practice setting as in academia.For many years human clinical trials received relatively little public attention. In the wake of several well-publicized research abuses, Congress created in 1974 the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research to formulate recommendations to protect human research subjects. The Commission’s 1979 Belmont Report helped to guide the Institutional Review Boards that review the ethics of federally funded research. (shrink)

The siren call of individualism is compelling. And although we have recognized its dangerous allure in the realm of adult decision-making, it has had profound and yet unnoticed dangerous effects in pediatric decision-making as well. Liberal individualism as instantiated in the best interest standard conceptualizes the child as independent and unencumbered and the goal of child rearing as rational autonomous adulthood, a characterization that is both ontologically false and normatively dangerous. Although a notion of the individuated child might have a (...) place in establishing a threshold of care obligated and enforced by the state, beyond this context we should turn our attention more explicitly to the relational interests of children. (shrink)